Growing, Growing, ... Gone??

I know that many of you are waiting for a update and once again its going to be brief. The Doc. has put me on all kinds of new meds. and I am having a hell of a time trying to adapt.

My last appointment with the Doc. was not the way I had scripted it to be. He must not have received the "final cut." Seriously though, he was only able to drain a little over 1 liter this time. Ya, I say pooh to that. He had to schedule an appointment to have the perma-catheter put in. He then told me it was time to be taken off this chemo because it didn't appear to be working. Then I said, I have just now only received one full doses of the stuff, How can you say for sure that it is not working?? He then said, I will order you a CT.Scan this Friday. I think to myself... much better.

Now two days after my "catheter" appointment... still retaining fluids but this time not only in tummy but also in legs, ankles, feet, toes, and other places I thought not possible. This time I think man this is it! Maybe my Doc. knows that my body is saying that enough is enough. So, I call him, let him know whats going on and ask him about that catheter as I could desperately use one about now. He tells me he is sorry but it is going to be at least two weeks. As for the time being I must go to the Doc. in oncology to have my fluids drained... the bad news is that he can only drain my abdomen... as for my other extremities... well he prescribed a water pill. I can only hope this can bring some form of relief. If not, I really don't know what will happen next.

Now I am starting to fade... yeah!! Sleepy time.

Just a few more things and I think I will have brought you up to date with all my drama. I recently fired my Oncologist of three years. Three years to long anyway. Her attitude was becoming really pessimistic, now I know that they need to remain realistic but I felt like she had given up on me. Frankly, I am not ready to quit so I found a new Doc., one who still had some trix up his sleeves. Imagine that, and my last Dr. said that there was "really nothing more that could be done" and "have you thought about ending treatments." I will quit when I am ready, my body will know. My body will know better than some Doc. will. In fact here is something I find remarkable. My last Doc. said I would last 6-8months with out treatment and even more discouraging my new Oncologist said that the average person with my type of DX would last no longer than 4-6months. Keeping that in mind, I have not had a successful treatment since July of 2006. So it has now been 8 months. Granted, I know things could go terribly wrong from this point but it just does not seem that way. I am not bed ridden, I can still eat (to much) go on errands, hell I even planted my first veggie garden this week. Now I hope to see them grow, then I hope to enjoy eating them.

There was one other thing that I wanted to fill you in on. It was regarding my new Doc. and his new chemo regimen. That will have to wait till next time. I am TOO TIRED.

As for now, please keep your fingers, toes, eyes, and legs crossed for me on CT Scan Friday.

Tom C., your right the sun makes everything a little better, I've been spending a bunch of time outside... I just love the spring.

Erika, thinking about you, wishing things were different for the both of us.

Remembering Eric

I know I said I would post soon to give a update on my health. I am going to make this update really short because this post is not intended to be about me. My physical being... I feel strange. I am bloated everywhere. I have lots of pain in my liver and I believe I am suffering from insomnia. Will talk about that more on my next post... promise.


This post is for Eric and Amanda.
Eric passed away one year ago, March 17, 2006. Eric, who was battling leukemia, died from complications that were brought on from the chemotherapy drug. My husband Cary met Amanda via the internet. Its truly amazing how invaluable blogging has become for us. We have meet so many incredible people, people like Eric and Amanda. So many of you I consider close friends and yet we still have not met.

Amanda, I wish there was something I could say or do... I wish I could meet you in person and give you a big squishy hug. You are such an amazing woman. Even in your own time of grief you have been there to comfort us. I admire you so.


Amanda as I close this post I want to share with you a piece of a quote from a dear, wise friend:

"Remember the great times that you have shared."

With love,

Lori and Cary

This is so, so draining.

Quite a bit has happened since my last post so instead of writing one long post I think I will chop it up in smaller portions, just to make it easier on myself. Also, I will try and explain myself as best as I can but be warned I am on some heavy pain killers and just between meself and u and never really learnted my grammar all to good. ; )

My premeds (decadron) are finally wearing off. Decadron can make a person (this one especially) suffer from insomnia. This typically only happens on the day of treatment. For example my last dose kept me awake for about 35 hours and that was even after taking sedatives and benadryl, so its actually a great sign that I feeling a little sleepy by 3:00 a.m.

So to try and catch you up... I am no longer taking Tarceva, at least not now. It seems that I fell victim to most all of the possible side effects of this drug. From what I understood it was supposed to be slightly easier than chemo but it wasn't working out that way for me. I had the typical rash, dry, burning, itchy, acne all over the chest face inside of ears and even scalp. By the second week it even began to appear on my back. The rash was a bit like the chicken pocks. The acne was mostly small pustules but there was also the occasional big huge under the surface of the skin don't even get near it with a ten foot pole kind. It was yuck, yuck, nasty. Then of course I had the diarrhea but I also had vomiting and finally lots of fatigue. Maybe the fatigue was because of the two intestinal issues. So there I was seemingly suffering from my symptoms more often than I would from taking chemo. Typically after chemo I would suffer from any vomiting/diarrhea at the most 2-4 days after treatment but with the Tarceva I was having spells every couple of days and of course the rash/acne just was only getting worse. I have heard from many that the rash will begin to come and go, almost every two weeks or so though never fully subsiding. Not sure about the other side effects. My main reason for discontinuing the drug was because I had a little voice inside my head that said, "Ya know, I am not totally sure about this drug. We don't have much time, let us try the other option first, we can always go back to Tarceva if this next combo does not work out." I apologize if the last explanation was "more than you needed to know." This is my blog I can cry if I want to. : ) Frankly I am in need and entitled to a good cry. : )

Next issue... I think I will now tell you what is really draining me (bad joke.) Roughly 11 days ago I began to (unwillingly) retain fluid in my abdominal sack. I started feeling bloated on Thursday and by Monday my belly was the size of a watermelon. For a short time I was able to slightly sympathize with those of you who are pregnant. Anyways Monday afternoon I went to the hospital to have the fluid drained from my belly. It involved a very large needle. The most painful part was the process of the localized anesthesia but after that any discomfort I felt was from the idea that this really large needle connected to a tube was being moved around in my belly. In the end they were able to drain about 2.25 liters. There was definately more but the Dr. was afraid of stabbing any organs that he could not see. God Bless him for that. Having that fluid drained brought much relief. The pressure from the retention was causing quite a bit of pain. I could not even urinate well. Bummer for me, this relief was short lived. Within a few days my belly began to grow again. Tomorrow I am scheduled to have more fluid drained. Then the Dr. and I will discuss what is more than likely causing this. This is not an uncommon symptom for those who have damaged livers or in my case a liver layden with tumors . Back to the fluid retention. It appears that the best option or rather easiest option will be to furnish myself with a catheter. Then every week or so a home nurse will come to my house and drain my fluid. As I set here and right this the reality of this is really coming down on me. I realize that the only thing that can save me is a miracle. Currently I think I am functioning out of shock and sedatives yes and I am sure those pain killers help too.

Wow, It is now Almost 6:00 a.m. I have a counseling appointment I must be at in 2 hours. Looks like I am going on another marathon.

Last but not least ~ Amanda, thank you so much for the beautiful lei from Hawaii. I was just so shocked when I received it. I really had no idea. Cary did not mention that you had asked for our address so I wasn't expecting anything let alone such a beautiful arrangement. What a surprise! ~ Erika, Thank you so much for your honesty...our little email exchange ;) ~ My family, Tia Marge, Karen and Drina. Thanks for the comments and the love. ~ Cousin Amanda, your such a little Angel. ~ My mother-in-law Flo for coming all the way down from Grass Valley twice a week just to spend time with me, listening to me blubber. ~ Alice thanks for all the help with the house work. The afternoon juices. Cary and I just can't keep up anymore and it has been a tremendous help. ~ Mom, thank you for just being here. Cary and I love having you around. ~ Connie if you ever get time to read my blog in between all the volunteer time that you do. Thank you for all the free weekly massages. ~ Joyce thanks for taking the time to respond despite your own personal trials. ~ Thanks to all those who leave me your comments of love encouragement, prayers, meditations, whatever it may be. The majority of you I have not met yet you take the time to let me know your thinking about me and you care. Your comments really mean so much to me.

So much for a short post. I still have more news to tell and will probably learn more at my Dr.'s appointment tomorrow or shall I say today.

Until then, live and love every moment.